CAR-T Cell Therapy: Introduce yourself and connect with others

Hello fellow CAR-T patients and caregivers,

My name is Greta. My husband and I are from Michigan and getting ready for CAR T cell therapy. Colleen gave us a great introduction to the Mayo Connect last week. We are grateful for any support, knowledge, and/or advice you can give us prior to his T cell infusion next week. The wonderful team here at Mayo has given us a lot of information before we start this critical phase in the process but it would be great to have your patient/caregiver perspective. Thanks in advance for any advice you can provide.

Greta--My husband underwent CAR-T immunotherapy in May-June 2018. I can tell you this much:

Make sure you have all your living accommodations set. You will be in Rochester for at least six or seven weeks, possibly longer.
Be prepared for anything to happen. This CAR-T is rough. Really rough. The side effects can happen right away--within 24 hours. My husband was in the ICU for days. One night three days following infusion, his fever was 105.4 and his heart rate 180. There is a reason why all those pre-tests were necessary. The neurological effects are rough too. The CAR-T team will put your husband through a battery of questions and simple tests several times every day. One time you husband will do pretty well. The next time, he can regress. Sometimes it's two steps forward and one step back. Other times it will seem like one step forward and two steps back. And my husband didn't have as serious a time with the neurological effects as another poster did. Have you ever been around someone with a bad head injury/concussion? I mean a really bad one. My sister had one in an auto accident in 1996 and I helped care for her (she recovered with only a couple of minor aftereffects). But the neurotoxic effects for my husband were very similar to the concussive injury my sis had. When asked during his several-times-a-day tests the team gives, your husband may not know what city he is in, and may not rememberr what he had for breakfast a half hour ago. He won't be able to draw the simplest of figures--like a hexagon. His handwriting will be affected and it will be an indecipherable scribble. His balance and ability to walk by himself will be affected--he will be taking walks with the nurses and will have to have support--a walker and a nurse waling with with him at all times. He will have some physical therapy. All this is normal. This can go on for days. But all these effects are temporary. My hubby's were gone by the time we went home. The doctors, PAs, nurses--well, everyone on the CAR-T team and on Eiseniberg 7-3 and 7-4 is stellar. They will pay very, very close attention to your husband. You, too, will be a critical part of his recovery. When they tell you that you will need to be with him 24 hours a day--they aren't kidding. You will need to be on alert for any changes in his behavior or cognition, especially when he is an outpatient. As for the outpatient clinic on 7-4, sometimes you can be there for hours--especially if your husband will need infusions of fluids, potatssium, etc. Also--one more thing--stay away from the Eisenberg cafeteria cheesecake. It's addictive. Especially with the blueberries on it. You will find yourself craving it after just one piece. You have been warned.

Ann, Thank you so much for this advice and your prompt reply. We are just 2 days away from the infusion so this information will help me and My family to be more prepared. I also appreciated your levity — the cheesecake may be too hard to resist on some of those tough days ahead. I will have to get a piece in your honor 🙂 Thanks again for your thoughtful response. We sincerely appreciated it. Greta

Good luck! We will be thinking about you! Also, you can order the cheesecake from the inpatient menu--that is, if you fail to heed my warning. My husband says most of the dishes he tried on the menu were good. If you are an inpatient for a while, hunt down the dietician on floor 7. Her office is very near 7-3 and 7-4. She has a super-secret menu. Shhhhhhh….

Ann, Thanks for the good thoughts! Good to have the "intel" before we head into rougher waters. I already treated my self to the blueberry cheesecake 🙂 I hope to post again in the next couple of weeks with a good report.

Hi @greta_k, I've been thinking of you and your husband for the past few days. How are you doing?

Hi Colleen, thanks for touching base. Graydon having a rough time but doing okay. On a lighter note, the dietary folks told me cheese cake won’t be on the menu anymore- I had to tell her the story about ann saying it was addictive. Fortunately it will still be available for purchase for visitors- crisis averted! LOL! Greta

Greta--Glad to hear that your husband is hanging in there. Devastated to hear that Eisenberg took cheesecake off the menu! We must petition them to put it back on!

Good to hear from you, Greta. I'd also like to bring @raemark2010 into the conversation along with Ann.

Greta, you say that Graydon is having a rough time. What has been the biggest challenge for him? And for you? Are you able to get enough sleep?

HI Colleen, I feel like we are in the thick of things- Day #7. The fevers have taken hold and the neuro beginning to set in. It is good that I am staying in a hotel close by so I can go back and forth, be close by and sneak in a nap once in a while. Greta